LDI Update: August

Okay, this is going to be an overall treatment update along with an LDI update. But first, I want to give a huge shout out to all of my amazing Lyme friends. Seriously, I wouldn’t be able to get through the hard days (or any of the days) without all of you. It’s absolutely impossible to understand what someone with a chronic illness is going through unless you have one, too. Meeting other people who struggle with the same issues as I do has been beyond helpful. I know I can count on you all when sh*t hits the fan and I need to vent or need reassurance I’m going to survive (seriously). It’s beyond helpful to just have someone to listen. SO, THANK YOU A MILLION TIMES OVER! ❤

I took my latest lDI dose on Tuesday 8/25, 11c. I didn’t choose the best time to take it as I took it the same week as a full moon (8/29). DUMB! My symptoms always pick up a few days before a full moon but I also believe I flared a bit from the LDI.

If you all recall, at the end of May/beginning of June I did a series of LDI doses. I started at 15c and every week after that I did 1c lower until I hit a dose that made me feel good. I took 11c right after a week vacation in California and I felt pretty good the next day. I wasn’t sure if it was the LDI or if it was just me feeling rejuvenated post-vacay. So the following week I took 10c, just to find out. Well, that made me flare! I was exhausted. So we decided 11c it was.

I’ve waited the 8 weeks and just repeated that 11c BUT we increased the amount of antigen in the formula. This may sound confusing. It was the same c (strength) but stronger antigen AKA less “filler” in the formula and more of the 11c in the dose. This may be what caused my flare from this round.

A flare for me has meant being even more tired then usual (really, is that possible?! Apparently), trouble falling asleep (ugh really? BUT I’M TIRED!), headaches, tummy troubles (also, is that possible, my stomach is already a mess?!), increased anxiety, and just feeling off.

We will see what my doctor has to say when I go to see him in 2 weeks. As always, I will keep you all posted. I get a lot of emails about how LDI is going and if I’ve seen improvements. Honestly, I haven’t seen improvements form the LDI…yet. LDI is a process. I know all of Lyme treatment is a process but LDI takes time to figure out dosing and once you do it takes many doses to feel improvements. So, there won’t be a quick or easy answer and you all will have to bear with me through this process :).

I’ve also begun bee venom therapy in the past month. I had a pretty strong reaction to it so instead of going full on we have to desensitize me. This means starting with just one bee, doing taps, and building up slowly. Once I am able to handle tapping from about 10 bees, I’ll be able to do set-ins, and then full stings.

Bee venom has an amazing amount of antibiotic, anti-inflammatory, and healing properties. It is one of the only things that can get inside (in-between) cell membranes where the Lyme hides. BVT can be healing in a number of chronic illnesses from MS to arthritis to Lyme and beyond.

Last but not least, I have also added procaine injections into my regimen. That’s right, I get to give myself nightly injections. Procaine is supposed to help calm and reset my overactive nervous system. I am doing the injections in my abdominal area in an effort to get my digestive system to relax. I’m not sure anything will ever help my digestive system (unless I can get a transplant!) but I’ll keep trying.

If you have any questions about the treatments I’m doing, feel free to leave a comment or contact me!

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Published by Lemons 'n Lyme

So, my name is Victoria. I was recently diagnosed with chronic/long-term Lyme Disease. It has been one of the biggest reliefs of my life. I finally have an answer for all the pain I've been in for years. I'm 20.
I love to bake and cook. I created this blog to 1) chronicle my recovery 2) share my recipes. My recipes are geared to those with Lyme in terms of nutrition and anti-inflammatory, etc. My research has shown that eating a paleo/gluten-free/low-carb diet is best for those with Lyme, and although I try to stick with this I fail horribly at times. Follow along and feel free to contact me! :)
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28 thoughts on “LDI Update: August”

Hi Victotia,
My name is Denise, I have been reading all you have to say about your treatment.
I do have Lyme also, the symptom had started in 2012.
I was wondering if we can talk on the phone it would be better for me,
I could call you or you could call me,
Would that be possible?
Thank you
Sincerely Denise

Victoria! Thank you again for your wonderful posts. It’s wonderful to hear of the protocols you are doing. I have only had one dose of LDI from my LLND this month but it was for seasonal allergies. She was going off on holidays the week I saw her and we couldnt arrange the initial weekly LDI doses for Lyme as a result. So I will post a message to you once I get started. Yes, it is a process and we all are getting lessons in patience with this disease. I’m excited to find out more about the bee venom therapy. Good for you to explore what is out there. I know we all benefit from all the shared information.
Hang tough everyone! Patty

I definitely want to hear how the lyme LDI goes once you start! I’m so inpatient so this has certainly been a process for me :)… good learning experience, I suppose. I’ll be sure to share more about BVT as my treatment continues.

Hi. I just started the LDI shots also. Only one so far at the lowest possible dose. It’s been interesting so far. I was extremely sick for 6 years and on heavy duty antibiotics till I recovered. Then one day out of no where I started to get sick again. I wasn’t thinking Lyme but sure enough…it was. I did more antibiotics again but just wasn’t cutting it. So my LLMD suggested I give the LDI a try. I am hopeful about this. I would love to connect with you on the phone if possible. I look forward to hearing from you.

Victoria you are such an inspiration. I was diagnosed with Lyme 3 years ago after 19 years of trying to figure out why I was in so much pain and sooooo tired. We also find out my 16 year old daughter had it. We have each done one year of antibiotics but all symptoms are back. Can you point us in the direction of where you are finding these treatment alternatives? Thank you and God Bless.
Colleen

Thank you! Where do you live? I work with a very holistic doctor… you might want to look for an LLND (Lyme literate naturopathic doctor), chinese medicine doctor, or a doctor in your area familiar with lyme but who uses alternative approaches. I can see if I know any names in your area, are you willing/able to travel for treatment at all?

Hello fellow lyme sufferers. I am currently doing LDI for lyme sublingually. This is my first post to any lyme forum/page. I suffered for over a year doing every test in modern medicine trying to figure out why i was sick with so many different symptoms. Was even tested for lyme twice which both came back negative. After every part of my body was repeatedly tested and i lost my home amongst many other things and had to move back in with my parents due to the fact that i couldn’t work because of my symptoms. Lyme was the only thing that made any sense.
Thus began my search for a lyme doctor. After days of research i found a site that you put your address into and they send an email with lyme doctors in your area. I called the three names they sent me plus another that was given to me by a friend. Two of them never called back, one called back two weeks later and the first one i called answered immediately. She being the only one out of all of them that uses LDI. She diagnosed me easily with having lyme with a bartonella co-infection.
I had my first dose at 13c on Nov. 28th. I didn’t know it but i flared with unbelievable headaches. Just thought i was feeling awful as a normal cycle of my symptoms acting up. Waited 10 ten days and went back for a stronger dose of 12c and the same exact thing happened. So now i have to wait 8 weeks before my LLMD gives me a lower dose of 18c. Hoping very much that i find my dose while i sit in agony day after day waiting for my next dose.
Sorry for the long post but reading these types of posts from people who know my pain has helped a lot.
If anyone has any questions for me or ever just needs to talk, you can email me any time.

Hi rich, I have a similar story. Sick for over a year with many symptoms, the worst being neuropathy of my feet. I finally happened on an integrative doctor who recognized my symptoms. I felt it must have been divine intervention. I too tested negative on all tests. I was pos on 1 band on Igenex. But she thought bartonella & Lyme. Now she things possibly babesia also. I have been treated for 1 1/2 years with antibiotics & antimicrobials. I am definitely better , but no improvement in the neuropathy. My feet always hurt, so I can do very little walking. Does anyone have any ideas? My doc just suggested trying LDI. If anyone out there also suffers with neuropathy, please connect with me. Thanks!

Debra, I am sorry to hear about the neuropathy. I dealt with that when I first got very sick but the abx quickly cleared that up for me. Clearly they are not working in that regard for you. Unfortunately I don’t have any other suggestions at the moment besides forging forward with treatment. I’ll be sure to update you if I learn anything!

Hello all, I am thrilled to update my LDI journey. I am finding slow but sure reduction in muscle pain/burning. And this after just 3 doses!!! However, my immune system has been so taxed i have been sick sick sick for months, from cold, to cough, to sinus to ….. I’ve upped my Vitamin D3 dose and that has helped tremendously,but just found out that i have mold in my house and so I have spent the last month interviewing and choosing a reputable company to do the removal and decontamination. I move back in later this week and hope to see some improvement in my immune suppressed condition ( I do work with kids so I have to find some way to shore up the health so i can keep working). I am hopeful to keep improving. One other thing i did this fall/winter, was join the LymeLessLiveMore fall group. it was fabulous. Such a great program and incredible resource (this fall was all about cleansing and parasites, and such great videos from Klinghart, Weil, etc
Wishing you all well, I wish I lived somewhere warmer as the cold weather has set in and is bothering my connective tissues. Oh well, have a good winter, Patty from Ottawa

Thanks so much for your blog. I’m just wondering if the LDI helped? I’m also wondering if the procaine calmed your nervous system? I’ve never heard of that but would be so willing to try it. I’m 17 years in with Chronic Lyme. I rife but have a lot of room for improvement. Thanks again.

I’m so glad you find the information I post useful! I have discontinued LDI, it was not working for me at the moment- either I crashed after or nothing happened. My doctor believes we need to address some other issues first and make some progress with other forms of treatment before returning to LDI. I think procaine did help calm my nervous system, specifically around my gut. It did not fix or cure anything but certainly provided some symptom relief. It can be used in a variety of ways and we’ve just started adding a little to my IV’s so we will see how that goes! I will keep you posted. I’ve always wanted to try rife, so you keep me posted on that ;).

Hi & thanks for your blog. Unfortunate that your llmd didn’t tell you that ldi & bvt are very contraindicated. Ldi works by suppressing the immune system & bee venom therapy acts to boost the immune system, so, unfortunately, doing them together means you are nullifying the effects of both. Came here hoping to know which was more effective but instead found putting your body through lots for nada. Hugs & hope for healing from one lymie to another.

I’ve never heard this before, thanks for sharing. I am surprised to learn this, though, as my doctor does work with Dr. Ty Vincent who has never mentioned this to him. I’ll have to ask at my next appointment! I am now doing JUST bees.